The Disease Lobbies

Virginia Hughes examines them:

[Rachel Best, a sociologist at the University of Michigan in Ann Arbor who studies the politics of medical research funding] tracked federal funding and patient advocacy for 53 diseases over 19 years. Though it’s impossible to tease out cause and effect, on average for every $1,000 spent on lobbying, the disease received $25,000 more in research support the following year, she found.

The data also revealed more subtle consequences of lobbying. For example, the general classification by advocacy groups of people struck by disease as helpless ‘victims’ may have led to less funding for diseases that are stigmatized because they are brought about by the affected individuals’ own lifestyle choices. Liver cancer (caused by alcohol and hepatitis infections) and lung cancers (driven largely by cigarette smoking) received less and less funding over the past two decades than would be expected on the basis of their prevalence and mortality rates, she found. “That’s potentially a problem,” Best says. “We need to guard against these considerations of worthiness and deservingness becoming more influential on scientific decisions.”

In a follow up, Hughes wonders if the sequester will impact disease lobbying:

[I]t’s interesting that the rise of disease-specific organizations came at the same time that the NIH budget was growing rapidly. During that period, advocacy wasn’t a zero-sum game: the government could put more money into one disease without taking from another. With the budget cuts, though, advocates could get much more competitive. “It would be a shame if that meant that diseases that had stronger advocacy would be preserved at the expense of diseases without advocates,” says Clay Johnston, director of UCSF’s Clinical and Translational Science Institute. “We would all suffer from that.”